Friday, February 11, 2011

I recently received a letter from the Assistant Deputy Minister at the Ministry of Health that maybe - just maybe - is a sign that the BC government is beginning to take steps to fix their broken policy on Lyme disease.

Here is what it said:

Dear Mr. Cubberley:
Thank you for your email of December 14, 2010, regarding the development of standards for Lyme disease diagnosis and treatment. I am responding to you on behalf of the Minister of Health Services.

I appreciate the time you have taken to share your concerns with the Ministry of Health Services (the Ministry). The Ministry remains aware of the debate around the treatment and diagnosis of Lyme disease, and as such, has asked the Provincial Health Services Authority to conduct a review and present options for establishing a provincial program for patients with complex symptomatology possibly related to underlying infectious diseases including Lyme Disease. The review is expected to be complete in Spring 2011.

Again, thank you for writing. I appreciate the opportunity to respond.

I appreciated and was heartened by this reponse because it wasn't a defense of the status quo but a surprising commitment which could lead to positive change. Here is the response I sent today.

Thank you for responding to my December 14th email criticizing Lyme disease diagnosis and treatment standards in B.C. I was intrigued to hear that the Provincial Health Services Authority will “conduct a review and present options for establishing a provincial program for patients with complex symptomatology possibly related to underlying infections”. Even tacit acknowledgement of unexplained chronic illness in B.C. – some of which is certainly Lyme and other tick-borne infections – is welcome and a potentially positive step.

It would clarify the intent of this review if its full scope were made public, so we can know whether it includes evaluating flaws in the existing diagnosis and treatment protocols. These after all are the principal source of so much chronic Lyme disease, with such devastating consequences for families. B.C.’s first priority must be to catch Lyme early and treat it effectively, so no one is left behind for lack of a month of off-the-shelf antibiotics. This will require addressing what’s happening in doctors’ offices across BC today, where fewer than one-in-twelve are sufficiently Lyme-aware to diagnose from symptoms, and nearly two-thirds don’t even recognize a bulls-eye rash as diagnostic of Lyme disease (without using tests). Just last week I heard from two chronic Lyme-sufferers who’d had EM rashes dismissed by doctors as ‘spider bites’, and were refused Lyme diagnosis and treatment on those grounds.

This made disseminated Lyme disease inevitable for both, a condition refused treatment under B.C. Lyme guidelines. While much depends on what this review looks at, more still depends on who is doing the looking. Lyme advocates are anxious to hear that no public health or infectious disease doctors who categorically deny the existence of chronic Lyme disease will lead the review or play a role in devising options for the clinic. Persistent refusal to acknowledge chronic infection is at the root of our problem today. Involvement of the architects of B.C.’s flawed approach to Lyme – the same parties who refused to disclose the results of the 2007 doctor survey or the exact laboratory methodology used to establish low rates of Borrelia in Ixodes pacificus or I. angustus ticks – would render it useless. These are the same officials who refuse to do anything to curb the inappropriate use of the flawed ELISA to definitively rule out Lyme disease, irrespective of symptoms including the EM rash! It’s also essential that whoever is given the clinical lead for a provincial centre for chronic illness have a more open mind than most of B.C.’s Infectious Disease specialists, whose association’s guidelines suppress detection of Borrelia and deny the existence of a chronic form. Can you give a clear undertaking that this initiative will avoid these pitfalls?

Finally, I would like to know what role those who advocate on behalf of higher standards of care for Lyme sufferers will play in the review of current standards and the development of this clinic? I think that CanLyme can make a huge contribution to improved standards of care, given its experience helping those who’ve been refused diagnosis and care due to Lyme-denial.

Notwithstanding any of the above comments, I was pleased to receive a response that wasn’t simply a rationalization of the status quo. Thank you on behalf of B.C.’s rapidly growing Lyme disease community.

This blog is about the rise of Lyme disease and other tick borne infections, in British Columbia and across Canada, and the failure of public health agencies to adequately warn and protect the public from this debilitating disease. Its purpose is to alert people to a danger that increasingly surrounds them, in the outdoors and in their backyards, and to pressure government, opinion leaders and public health officials to reform the medical framework for Lyme disease diagnosis and treatment. Today, due to faulty tests, lack of physician knowledge and inadequate treatment protocols, many patients are being forced to live with a devastating chronic illness rather than being given medically necessary care. Most have to travel to the United States to purchase healthcare they are entitled to under law in Canada, but currently denied. Many people are living in poverty as a result of personally financing antibiotics, which are the sole control and cure for chronic Lyme disease. This blog discusses issues and offers resources relating to Lyme disease diagnosis and cure. It aspires to be an instrument of change.

David Cubberley

I'm a community activist and have worked as both a Saanich Councillor and a Member of the Legislative Assembly for Saanich South (where I served as provincial Health Critic and first learned about Lyme). I advocate much-improved diagnostic and treatment protocols for Lyme and its co-infections, and for clear recognition of Lyme as a chronic, treatable disease. I also lobby for doctors to be informed not to rely on current Lyme testing, which is faulty but often used to rule out Lyme and withhold treatment. I have been serving as BC Director of the Canadian Lyme Disease Foundation (CanLyme)since 2009. Much information and advice about this complex and troubling disease is available at the CanLyme website: http://canlyme.com/. To arrange for public presentations on Lyme disease and public health, please contact me at: spokesman@telus.net.

ILADS is a nonprofit, international, multi-disciplinary medical society, dedicated to the diagnosis and appropriate treatment of Lyme and its associated diseases. ILADS promotes understanding of Lyme and its associated diseases through research and education and strongly supports physicians and other health care professionals dedicated to advancing the standard of care for Lyme and its associated diseases.